Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: edelweiss on May 07, 2017, 08:36:38 PM
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Does anyone else feel an extreme discomfort, like they want to climb out of their own skin? The opposite of relaxation and contentment. xxx
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I did. And I wanted to go to sleep and wake up when it was all over
I didn't even know who I'd become. X
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Was that in 2012 too Annie?
Did you just feel empty - no good emotions?
That's it - I want to go to sleep and wake up when it's over. If someone could put me in a coma until it's over I'd sign up right now xxx
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Yes I have - I call it "rattling" - it's like I can't sit still, can't rest, can't be calm. I expect it's how it feels when you are de-toxing from some awful drink or drug addiction.
My rattles usually happen in the morning.
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I'm sorry you have it too. I wish you didn't. So it's not just me then. I have it all day, every day. xxx
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You've summed it up perfectly,, Edelweiss! It's the most alarming and awful feeling - like you just want to get away from yourself! It's not anxiety and its not panic and I've had this really strongly the last 2 - 3 weeks now - but it's been there at some level since 6 months after my surgery.
Nothing makes it go away for me......no HRT, relaxation, occasional Diazepam, NOTHING.
I know a symptom of menopause is a 'feeling of impending doom' but surely we shouldn't get this all day, every day (and night)? Some days I'm better at pushing through it but that's all it is - pushing through.
I need to know that this is going to pass someday or I really don't think I'm going to be able to take it.......xxxxx
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Oh no, Tempest you too? It's almost impossible to describe isn't it? But it's the worst feeling.
If I go out I want to come home.
But when I am home, I can't relax there either.
Just like you, I don't know how to cope with it.
And nothing but nothing helps xxx
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Exactly!!!! The poster of this thread comes close to describing it, but mine is there all the time like you:
https://www.menopausematters.co.uk/forum/index.php/topic,14483.0.html
xxxxxx
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Yes started 2012 (sorry - must sound like a broken record)
It was as if something just switched off in me overnight. Like I'd been thrown off the merry-go-round and didn't have it in me to climb back on
I'm sure I slept most of my days away back then. I gave up my full time bookkeeping job because I couldn't cope with the pace of everything. I suddenly couldn't retain info and became so introverted it was ridiculous
X
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It is just like a switch, Annie! It 'switched' for me very suddenly in January 2016 - I can even remember the day it started.
Prior to that, 6 months after my surgery I could feel things were going downhill but it was slow. This 'switch' was a defining moment. I had been out for lunch with Hubby at a lovely country pub and afterwards I wanted to go for a walk in the little wood beside it. I stood there on the path and this is going to sound crazy - but I had spotted this little frog and I was watching it when suddenly this feeling that nothing was ever going to be ok ever again suddenly came over me and it's never left since then. As I said, the last 2 - 3 weeks it's got worse. I didn't think it COULD get worse, but it has!
I read Diane's story on her website and she seemed to have a 'defining moment' just like this and she describes it as the point at which her body had run out of the last of the stores of her own hormones. I think this could be it. In your case Annie I think it was after your ovaries atrophied completely following your surgery and perhaps in Edelweiss's case it's a case of the ovaries suddenly failing, which can happen in natural menopause at any time according to an article Diane linked to in The Telegraph.
Perhaps for some of us the menopause isn't a 'transition' (obviously surgical menopause isn't) and we go into some dreadful kind of shock that HRT never fully compensates for or indeed can't compensate for at all. This is my best guess, as medical science can't seem to explain this and we're having a particular experience that isn't felt by all women. xxxxxx
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Annie, no sorry, it's me that keeps asking you - was that 2012? I'm obsessed :)
At least you could sleep your way through it. I'd love to sleep through it.
Tempest I'm sorry you feel this way all the time.
I know how you feel now, but that's not a good thing.
I remember the date and time it started for me too.
And everything felt 'wrong' from that moment.
I can remember where I was and what I was looking at too.
And then I felt my happy feelings shutting down - my brain 'breaking', almost.
I don't feel that my ovaries failed.
I believe it was the way my body uses HRT that went wrong xxx
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I'm still early peri but I had a similar defining moment end of 2015 and I thought I was having a stroke and went to hospital. I think it's just 'that' cycle when things have shifted massively and I'm expecting more years before meno until (hopefully) it will all calm down.
I also used to wonder if you could book yourself in somewhere to be put into a long sleep until it passes! Consciousness was just too awful with the nausea and dizziness.
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Thank you Dangermouse, yes I know exactly what you mean and I would book in for a long sleep DEFINITELY if they'd wake me up when they can fix me/when it's all over. Does your HRT help you now? xxx
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I just went to cuddle my lovely man to sleep. But as I was lying there I could feel my heart palps, and every nerve ending pulsing and fizzing, I just wanted to run away from the feeling. I keep praying it will end but that's not working either xxx
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I remember my moment too. Sitting at work and felt like I was going to pass out. The reconciliations I did on a monthly basis suddenly looked alien. My head felt weird, heart thumping, brain foggy, I went to my car for a breather and walking across the car park my legs wouldn't work properly, thighs felt like wading through treacle, crashing fatigue knocked me. Edelweiss I could nap anywhere and anytime but couldn't sleep at the correct times, as I've said before it was like my memory had been tampered with, I'd go to call my mum then realise she'd passed years before
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Yep I'm a member of the " of this had been a 100 years ago I would be in a sanatorium gang".
I am 50 , at age 45 it's as if a switched had been turned off , from day to night , almost overnight.
It's been a daily struggle since , feel upside down , inside out , all at once.
For me lots of walking in the countryside is what keeps me as upright as possible , but mentally it's all a struggle , from uncontrollable sobbing , to a deep sadness mourning the person I was.
I am waiting for the positives 🙄 Because with added VA to the mix I haven't found any yet.
I'm on HRT , 1 pump oestrogel, utrogestin.
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I feel like that, but today I feel just terribly depressed. Its so scarey, and Im worried Im slipping into despair. Just a glimmer of hope would be good.
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Oh I am so sorry to hear all these stories but also relieved at the same time that I'm not alone.The last few days that's exactly how I'm feeling, sweating constantly, my body being zapped, dizzy, nauseous, achy, palps, exhausted and terrified all at the same time. I just feel overwhelmed. I fell 3 weeks ago and got a nasty bump on my head, I've been fine but the last couple of days it's been stinging and a bit sore, of course hormonal me was about to run to docs again (because I must have bleeding on the brain, or a fractured scull) even with all this going on I feel empty, like what's the point of carrying on each day if this is what it's going to be like :'(. Will it ever end
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Hello ladies. How are you all today? Twoodie, have you had a consultation with Diane and how did it go? xxxxx
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hi, yes i had a consultation and it was reassuring to talk to someone who had been thru hell and come out the other side. Im feeling terrible today tho & cant wait for my telephone consult with prof. studd.
i honestly cant go on like this and i admire all who have been battling for much longer.
hope you are doing ok x
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Bless your heart, Twoodie! What are you using for HRT at the moment? Good luck with Professor Stuff - let us know how you get on!
I'm keen to speak to Diane as her and my experience is exactly the same with surgical menopause. I'm speaking to her this afternoon - it's all down to lovely Edelweiss organising this for me. I hope she's around later so I can pass on hugs to her and see how she is today. xxxxx
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Annie - "The reconciliations I did on a monthly basis suddenly looked alien" EXACTLY that feeling - a perfect description of what I felt too!!!!!!! I remember looking at something and suddenly it looked very alien. What a sad story about your Mum... I believe they are always with us in our hearts. I sometimes talk to mine (not out loud!) and she always answers.
Tempest - it's coming up to half past 2. I'm thinking of you and hoping that Diane will give you comfort, re-assurance and good advice.
Maryjane - my heart goes out to you. 5 years oh my goodness. No improvement in that time? Darling lady, we all want you to feel better.
Twoodie - it's early days and you haven't tried Studd's magic formula yet. You don't know what your blood levels of estrogen are now. They might still be on the floor, hence why you are feeling awful. When is your appt with him? You are getting your bloods done beforehand, aren't you? We will all be rooting for you.
Yammy1 - you too? Oh no, I am so sorry. Wishing for much better days for you. This is just the worst isn't it?
A GLIMMER OF HOPE: Ladies I've messaged 3 ladies in past couple of days who were ALL where we are. Each of them have got substantially better. So there IS hope.
Much love to each and every one of you. Let's collectively hope for better days and nights. Oh, and a cure! If the power-mad men in this world would stop spending money on bombs and ballistic missiles, and spend on health and wellbeing instead, we'd be a lot further along xxx
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Just quickly - I'm here Edelweiss and phoning in 10 minutes! All thanks to you. I'll let you know how it goes! Hugs! xxxxx
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Edelweiss you really are lovely. My appt. is 18th and seeing GP this week to ask for bloods. Im so glad you have found some women who have made it through-did they share their secrets or was it just the passage of time? xx
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How did your appointment go Tempest ?
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I often describe it as coming out of my skin. For me, it's different than the gloom and despair feeling that can wash over me. When I'm coming out of my skin it's like there's something I should be doing but I don't know what. Its almost like too much caffeine, like I have energy trapped but no way to release it. It's very uncomfortable and exhausting.
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Lizab - hello! YES!!! Such good descriptions. We share the same feelings.
Twoodie - yes well I don't want to say who they were but it was a combo of things. I'll pm to share
Tempest - where are you? Are you OK? I really hope it went well.
Massive love to all xxx
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Thank you for asking, Dazned! :)
Diane was absolutely BRILLIANT! Our experiences have been pretty much identical - right down to both of our Mother's having had TAH/BSO and our experience of having documented cardio. issues and high anxiety on estrogen only.
I have plenty to take to my appointment tomorrow, and plenty of contacts to follow up. This was more than I could have ever dreamed of and I'm not going to rest now until I get things sorted. It'll take time and it'll doubtless be a bumpy road, but I'm going to keep pushing until I get what I need. Most of all, I feel VALIDATED. Annie, if you can I highly recommend you arrange to speak to Diane too - I mentioned your experiences, anonymously of course!
None of this would have been possible without you, Edelweiss! Thank you from the bottom of my heart. xxxxx
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That gladdens my heart Tempest :) Very much love xxx
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Aw that's brilliant you had a good chat. And thank you so much for mentioning me. When you get chance could you pm what was said please ? No rush, and good luck for your appt tomorrow xxxx
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Of course I will, Annie! :) I'm busy having a 'meeting' with Hubby this evening and preparing our notes for tomorrow but I'll jot you a PM as soon as I possibly can! Hugs!!! xxxx
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Yes you need to prepare for tomorrow, that is definitely the priority.
You'll get there girlie, you might get knocked down but my god you get up again for the next round xxxx
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Thank you Dangermouse, yes I know exactly what you mean and I would book in for a long sleep DEFINITELY if they'd wake me up when they can fix me/when it's all over. Does your HRT help you now? xxx
Yes it does thank you. I am too over stimulated by my surging oestrogen causing migraines so only take progesterone cream. It's still about getting the dose right though as hormone replacement is so complex.
Glad you're all being helped by this fantastic therapist and I love her 'pay what you can' strategy. When I'm in a more financially secure place I would love to offer the same terms for my clients.
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Do any of you lovely ladies have any experience with Prof John Studd? He appears to be the best in his field and I wondered if anyone can recommend him and his treatments?
Love to all Alesia xx
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Alesia I would suggest a new thread so that your question doesn't get lost here :-\ sorry I can't be if anymore help!
DaisyB x
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Hi Alesia, yes there are a lot of us who have been his patients, myself included. xxx
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Hi Edelweiss
Thank you for your reply, I'm a newbie here and haven't quite figured out how to use this site properly yet (brain doesn't function most days so it could take a while!)
Would you be kind enough to tell me your experience and/or point me in the right direction for the right thread and any other ladies who could shed some light on him please?
Thank you too DaisyB :)
Love & hugs Alesia xxx
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Would you be kind enough to tell me your experience and/or point me in the right direction for the right thread and any other ladies who could shed some light on him please?
Hi ALESIA - here is a thread about Prof Studd:
https://www.menopausematters.co.uk/forum/index.php/topic,32602.msg522858.html#msg522858
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Hi Alesia, sure I can PM you. xxx
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Hi Edelweiss
Thank you so much for your lovely message! I'm sorry I can't pm you back it says I'm not allowed??
I am shocked but not surprised by your dealings with JS, I have come across similar myself in the private medical profession.
The kinesiologist I'm seeing is Clare Snowdon Darling her clinic is called Balanced wellness, she has a great website with lots of info and blogs, she has helped with my eating as I had been unable to eat much at all for months, lots of supplements to build me back up which has improved skin, hair etc and magnesium which has really helped with the insomnia and adrenal support which helps with the shaking/anxiety.
I still feel dreadful most of the time, been feeling very tearful, depressed just lately and not coping with that too well. I can't seem to get to the bottom of why my Oestrogel just stopped working after 21 years. I've asked my GP to refer me to Nick Panay so fingers crossed she will be able to.
Actually your info was very helpful as I had my suspicions about JS and I'm so sorry for you being treated with such disrespect and at a time when you are so low! Disgraceful!
Are you feeling better now? Did you manage to get the right HRT regime to help you?
I will have a look at Louise too :) thank you so much!
Alesia xxx
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Thank you Jenna :) xxx
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Hi Alesia,
I'm so sorry to read your story and all of your symptoms. What's happened to you has happened to me too.
I was 52 when it happened, but had been on estrogel 4 years. I don't believe it's a 2nd meno tho, I think it was just masked before by the estrogel, which has now stopped working for us.
Anyway, no need to thank me, you are so welcome. Anything I can do to help.
I believe Nick Panay is booked up until at least August/September probably longer. He does have associates but I think most women would rather see him. He has a good reputation of course, but he doesn't have access to medications that any other specialist doesn't.
I thought Louise seemed dedicated and caring. She has the 'human touch' that others lack. She will do phone consultations if you're not near her (Solihull).
I hope you find an answer to your problem, after 21 years that is such a long time isn't it? I know how upsetting and shocking it is when it happens, you just can't believe it can you? And, as you say, you'd never think in a million years it was meno. It took me months to realise (to my horror) what it was. While GPs psychys and gynaes told me I was wrong. Turns out I wasn't - tho I am not glad to be right.
Wishing you the very best and hope for a solution for you soon.
Love, xxx
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Hi Edelweiss
I'm so so sorry to hear the same has happened to you! It really is the most awful thing and I wouldn't wish it on anyone!
Mine started last September just out of the blue aged 51 and to say I haven't had a life since then is an understatement :(
I'm hoping by seeing Nick Panay he will have some answers, being an expert I'm hoping he will have come across this phenomenon before? There doesn't seem to be any meno experts in my area at all.
I've been reading that women who have had Hysterectomy and lost ovaries need testosterone too? I've always only had Oestrogel so am wondering if that might help.
Was Louise able to help you at all? Have you tried any other type of Estrogen apart from the gel? Sorry I haven't had time yet to read through your other posts so I don't know much about your journey, did you have a Hysterectomy/ have you still got ovaries etc?
My Gastro consultant has been wonderful and is trying his hardest to find someone who knows about these things and will refer me so fingers crossed on that too!
Technically it's supposedly not possible to have a 2nd meno, my GP says it's a case of we've fooled your body for 21 years into thinking everything is ok and it's now realised it's not. But it seems a bit of a coincidence this should happen to us at the exact age that Menopause would naturally occur??
Someone else mentioned that the receptors can stop working ... There must be an expert out there who knows about these things surely? :-\
Love & hugs xxx
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Hi Alesia, my story is in my profile signature. I haven't found a solution yet. Lots of love and hugs xxx
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Oh my goodness! So here we have 2 ladies, both with the same thing happening! Is this a coincidence? NO!!! There are numerous reports of this very thing over at Hystersisters.
I have a couple of theories of my own. Firstly, that estradiol becomes unrecognizable in some women over time as the body exclusively produces estrone only from peripheral conversion as we age, and this is what the receptors are 'expecting' - they simply can't cope with the much stronger estradiol any more (I think this is my problem, but I'll go into that later). Quite a few women over at Hystersisters can only tolerate estriol, which is weaker.
The role of the adrenopause, which I've posted about before.
This phenomena needs posting about more! For those who haven't lived it and poo poo it - well, they have no idea! Even Dr. Currie has confirmed that estrogen receptors can become non receptive but no one can explain WHY.
Much love to both of you! xxxxxx
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Hi Annie
Thank you for your kind message :) For some reason I cannot PM anyone back? It's says I'm not allowed?
So sorry to hear you are suffering too! It's just unbelievably dreadful but good to hear you have been feeling a bit better on Tibolone! Long may that continue for you!
Feel free to message me anytime, it's comforting to know we are not alone on this journey
Love Alesia xxx
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Hi Alesia
I think once you reach 10 posts you can private message
I'm still in disbelieve I've only come across your posts today - I have got to start reading these forums properly ! X
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By the way, I stopped my estrogel last night and feel a bit better. Not crazy sick and wired today, but we'll see. For now I'm going to wait things out for a bit if I can - my body seems to strongly reject anything Estradiol and I think I'd be flogging a dead horse by trying other combinations.
So now I'm officially part of your 'club'. I'm so sorry that this is the predicament we all find ourselves in! xxxxxx
P.S. Shall we start an official thread named 'The Road Less Travelled' just for us?
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Thank You Tempest! That is really interesting, the more we share these things the better! :)
Has anyone thought of gathering up all the info from the women here who are suffering the same phenomenon and sending it to the experts?? I have no idea who but there must be someone out there who knows these things surely?
I'm new here and have lots to learn so forgive me if I say silly things ::)
Love xxx
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That's actually a BRILLIANT idea, Alesia!
This forum is for everyone, HRT, no HRT - it's called Menopause Matters, NOT HRT Matters so we should be able to use it as a platform for all things.
I think we should all get together and make a plan about whom we should approach.
Hugs,
Tempest xxxxx
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Am I eligible to join ? I'm still not cured, just better but often times I think I tell myself I'm better than I am x
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P.S. Shall we start an official thread named 'The Road Less Travelled' just for us?.....Sounds like a great idea Tempest!
Let us know how the stopping Oestrogel goes? I'm particularly interested because my Kinesiologist suggested I do that as when she tested it she said it was doing nothing for me and said in fact it's part of the adrenal problem!
Yes lets do it :) ... What have we got to lose?
Love xxx
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Thanks Annie re the 10 posts thing :)
Of course you can Annie, we need every woman who has suffered this phenomenon to join so we can show these experts that this is real and we need extra help!
Love & hugs xxx
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Edelweiss lets hope one of us does and then we can share it with everyone :)
Love & hugs xxx
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Just out of interest have any of you or did any of you have extreme weight loss during these meno symptoms?
I've lost 3 st in the last 7 months :(
Love to all xxx
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Yes about 2 stones dropped off me. No appetite at all, and though I have eaten I've lost weight. xxx
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I haven't found anyone who knows why this phenomenon happens, let alone how to fix it, and I've seen the top ones. They all said different things. xxx
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Let's do this! Do you want to start the thread, Alesia?
Annie, you're always more than welcome dear heart! xxxxxx
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Just had a thought! So both Edelweiss and Alesia have exactly the same symptoms and you were both on Estrogel at the time????? Wow....... :o xxxxxx
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I'm wondering if the Estrogel specifically burns the receptors out over time.......I simply can't tolerate the stuff. After 2 weeks approx., I get sick on ANY dose of it - mad wired, feel sick, muscle cramps, disoriented - it started subtly 2 days ago and Hubby said he noticed last night when we were chatting. He said it was just as well mine had run out or he was going to ask me to stop it anyway....
My other posts over the last couple of days have been really erratic if you take a look.....I couldn't even see it myself! xxxxxx
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Hey Tempest, I don't think it's estrogel alone, although I did report it to the FDA in the US. I believe Annie was on Elleste Solo, and Dazned on Elleste Due when it happened to them. xxx
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I had the same wired symptoms when tried the gel and patch for only a few days so mine wasn't body having got used to and receptors dampening down. I just had too low progesterone to be able to cope with the excess oestrogen.
It could be for some that because progesterone falls at a steady pace that after the oestrogen was working it then starts imbalancing you as it becomes too strong without the natural progesterone to keep it in check.
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True!!! I'm just thinking viz. the rapid weight loss which is specific to both you and Alesia.
I'll share a bit of info. here which I've been keeping to myself. When I had anaphylaxis for the first time (near fatal) I had to rapidly withdraw from Morphine which I had been on for 5 years after failed back surgery. I developed Post Acute Withdrawal Syndrome, which I've posted about before and my symptoms were EXACTLY what we're seeing with you and Alesia particularly. I don't think I've ever fully recovered (but having said that, it has got a LOT better, so try not worry that you'll be like this forever if this is indeed the issue)!
I think what you're experiencing (and others) is a form of withdrawal syndrome as HRT has abruptly stopped working for you. In fact, I hold to my belief that menopause in itself is a withdrawal syndrome. It makes sense - we're withdrawing from our own hormones! xxxxx
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Yup - absolutely that too Dangermouse in my case! The small amount made by my adrenals can't 'balance' the estrogen.
It's interesting that the stats. for surgical menopause are that after 5 years, only 25% of women continue their ERT. It's impossible for most to replicate that balance which the ovaries once produced. xxxxx
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Edelweiss same here I am eating well now but still losing weight :-\
Tempest I haven't got a clue how to start a new thread ;D I'm still finding my way round posting! Happy for you to start it if you'd like to? Your thoughts on withdrawal are interesting too.
Does anyone know what happens if we stop the Oestrogel? Do our bodies eventually adjust even without ovaries?
Have any of you had a problem with taking medication, supplements and eating certain foods after this happened to you? Since mine started I am unable to take anything without horrific side effects, I had used Diazepam on and off for years (only occasionally when needed) but now it affects me badly and in a totally different way! I'm wondering if the weight loss and intolerances are due to a metabolism shift?
Love & hugs to you all xxx
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Alesia, since my Post Acute Withdrawal experience, I became allergic to a LOT of things. Annie is the same (both of us anaphylaxis). There HAS to be something in this!
Sorry - I didn't realise that you're a fellow oopherectomy lady! xxxxx
P.S. Forgot to say, Annie's ovaries dissolved after her hysterectomy so she's in the same boat as us!
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I had the same wired symptoms when tried the gel and patch for only a few days so mine wasn't body having got used to and receptors dampening down. I just had too low progesterone to be able to cope with the excess oestrogen.
It could be for some that because progesterone falls at a steady pace that after the oestrogen was working it then starts imbalancing you as it becomes too strong without the natural progesterone to keep it in check.
That's all I can think of in my case, no other logical reason or explanation from anyone
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Tempest I haven't got a clue how to start a new thread ;D I'm still finding my way round posting! Happy for you to start it if you'd like to? Your thoughts on withdrawal are interesting too.
Does anyone know what happens if we stop the Oestrogel? Do our bodies eventually adjust even without ovaries?
Have any of you had a problem with taking medication, supplements and eating certain foods after this happened to you? Since mine started I am unable to take anything without horrific side effects, I had used Diazepam on and off for years (only occasionally when needed) but now it affects me badly and in a totally different way! I'm wondering if the weight loss and intolerances are due to a metabolism shift?
Love & hugs to you all xxx
re starting a new thread. Click on the board that you want - ie that best suits the subject of your post eg All Things Menopause. Then look in top right of all the threads where they are listed and there are some blue tabs. Click on "New topic" and hey presto - a box comes up - you just name the title of the trhead, write your post in the box, press post or whatever it says and away you go :)
Re adjusting to reduction in oestrogen - how long is a piece of string? Some women adjust to this whereas others will go through a period of hot flushes before adjusting. The unlucky few will continue with hot flushes for years. The oestrogen deficiency though - will last for ever so any health consequence of this will gradually become apparent over the years, so the longer you can take it for the better. If you've had a hysterectomy and ovary removal - there is no reason not to take a low dose oestrogen for years.
Any persistent unexplained weight loss ( ie not due to change of diet, exercise or medication, or stress) should be investigated by a doctor.
Hurdity x
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Hi, Annie! (((waves))). x xxx
My best guess is its a total imbalance in the Central Nervous System as the body tries hard to reach homeostasis. This knocks your metabolism off too.
The best remedy I was told if this is the case is rest, extreme stress reduction, avoid unnecessary medications and good, simple nutrition. And Tincture Of Time........xxxxx
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Definitely something in this Tempest!
Thank you so much Hurdity I will have a look at starting a new thread :)
I'd be happy to take Oestrogen for the rest of my life, I have no concerns about any risks but it seems my Oestrogel either isn't working anymore, I need to go lower or higher, I need a different type or I need something else like testosterone? When I put it on now I just feel weird, when I tried upping the dose I felt an increase in burning GI symptoms, fatigue, weakness and tingling in my hands and feet. I had for 21 years always used it at night but if I do now I'm awake all night feeling wired ... I just can't seem to find a doctor who knows anything :-\
The weight loss would have initially been because I couldn't eat but even after I started eating properly again it has continued, I've seen 2 Gastro's, Endo, Neuro, and 3 GP's none of them have an explaination for the weight loss.
Alesia x
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It feels almost like the Oestrogel is poisoning me ... GP gave me Femseven 50 to try a couple of weeks ago but it made me feel so sick and dizzy so she said go back on Oestrogel.
It's all so confusing and meanwhile I feel like I'm dying everyday :'(
Love xxx
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Same here Alesia, exactly the same xxx
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Do any of you lovely ladies understand test results?
Serum Oestradoil 142 pmol/L
Serum progesterone 0.4 nmol/L
Serum testosterone 1 nmol/L
I have no idea what these mean or even if a serum blood test tells you anything?
Feeling desperately unwell this afternoon :'(
Love & hugs xxx
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Oh Edelweiss you too!
It's just so awful my heart goes out to you truly it does xxx
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My opinion is that your oestradiol is low at 142, I believe it should usually be over 200 for symptom relief, and preferably more than that. Some specialists aim for around 500-600, sometimes even more.
What dose are you taking Alesia? xxx
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My oestradiol has never been lower than 400 since hrt testing yet 400-750 I felt horrendous. I haven't had it checked for a good year +
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I can tell you that your progesterone is at the very lowest end of normal at 0.4 for a 41 - 60 year old.
I truly think it's an imbalance problem. I feel just as you on ERT only and I've never had my progesterone checked.
I'm so very sorry that you're feeling so poorly this afternoon! How many pumps of estrogel are you currently using to achieve that level? xxxxx
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Yes Annie, I'm the same as you, I feel just as bad at 600 or 700 or without estrogen.
But since Alesia's levels are low, she might just not be getting enough estrogen into her bloodstream - I think that's still a possibility? xxx
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True - sorry I haven't been keeping up with the convo, I've been in and out today catching up when I can x
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In your case Annie, you''re like me. Horribly estrogen dominant at that level. I know over at Hystersisters that women say they have to use less as they get older as the balance goes horribly out of whack (adrenal output is less as we age and can't offset that level of estrogen and we don't have ovaries, so no androgen production there). xxxxx
(Posting a wee article here from The Hysterectomy Association - it says we produce in most cases enough Prog. from dietary cholesterol and adrenals, but if something goes wrong there or the estrogen dose is too high)........
https://www.hysterectomy-association.org.uk/information/the-menopause/oestrogen-testosterone-and-progesterone/
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I've started our thread, so that this topic doesn't get lost on the forum. I hope this is ok with Edelweiss and the rest of you - and that the opening post is appropriate.
Hugs. xxxxx
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Thank so for the link Tempest x
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You're always so welcome, Annie! xxxxxx
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Oops! Annie - did you note that it states that women may be supplemented with testosterone only if they cannot have estrogen? Interesting.........xxxxx
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Was that in 2012 too Annie?
Did you just feel empty - no good emotions?
That's it - I want to go to sleep and wake up when it's over. If someone could put me in a coma until it's over I'd sign up right now xxx
This is me to a tee! Xxx
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I wish that wasn't the case Alesia, I really do.
I read your comments about your kinesiologist - you felt that helped a bit? (Please say it did - I want this for you!)
It was great your appetite returned. I just want to feel hungry occasionally and to enjoy the taste of food, and tea and coffee. Life's just so boring without that! xxx
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Edelweiss I have been reading and replied to some of your posts. Like you I have had a dreadful time since beginnning of the year. I was slipping in and out the last 3 years and not really linking many of the symptoms to low estrogen. My taste and smell went haywire last summer. Looking back it was a bad chest infection as I was about to leave on holiday. I went off the rails - very uncharacteristic of me - I cancelled flights and refused to move from bed. Long story short I rebooked and went in the end - but the taste and smell left and dr said infection caused it and likely would be permanent. Well what's really interesting to me is that you have mentioned many of the symptoms I also have been experiencing- as well as loss of taste and smell! Last night (day 2 on sandrena gel) a good part of it returned and I was stunned to say the least! I have been seeing a chiropractor for two weeks so I can't say for sure why it is coming back but I will def keep an eye on from here on in. I hope you are doing ok today. I completely understand what you are in the midst of yet you still have the ability to comfort and reassure others. I sincerely hope you get some relief soon.
DaisyB xx
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Hi Daisy B, that's great it's come back. Yes it's definitely hormonally linked and I am sure the Sandrena is doing it for you. How wonderful!
I bet your IBS improves too - I hope so anyway.
As you know estrogel just stopped working for me. That's when my taste, smell, appetite went.
I've then tried Sandrena under care of Nick Panay's clinic. Really high dose. No improvement at all.
I feel incredibly low today and every day. It doesn't seem possible, but it is happening. I was annoyingly cheerful, positive and active before this.
Hoping for a miracle and this tibolone does something.
Enjoy your recovery! It must be utter bliss after what you've been through :) xxx
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Edelweiss - I know what is is like to be in the midst of it. Days felt like was treading through treacle, my brain was so foggy I lacked the ability to articulate what I was feeling, scared as hell and the anxiety had me convinced I was dying. I have spent too many days mourning for the woman I was and hating the women I'd become. Just know you are not alone - all I can do is send you a great big bear hug xx keeping fingers crossed the new treatment works for you. Don't give up. Xx
DaisyB
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:bighug: to everyone needing it today.
Hope tomorrow is brighter :)
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My opinion is that your oestradiol is low at 142, I believe it should usually be over 200 for symptom relief, and preferably more than that. Some specialists aim for around 500-600, sometimes even more.
What dose are you taking Alesia? xxx
I was taking 2 pumps when this test was done a month ago.
Thank you Edelweiss, Annie & Tempest re the low levels very helpful :) xxx
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I wish that wasn't the case Alesia, I really do.
I read your comments about your kinesiologist - you felt that helped a bit? (Please say it did - I want this for you!)
It was great your appetite returned. I just want to feel hungry occasionally and to enjoy the taste of food, and tea and coffee. Life's just so boring without that! xxx
Oh Edelweiss I wish that for you too! Food is one of lifes pleasures and I know exactly how you feel here! It took months for mine to return but has got better more recently since the Kinesiologist, she has helped with eating and sleeping and my skin, hair etc is looking better due to the high doses of vitamin supplements she is giving me ... Everything else is much the same unfortunately. xxx
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I"m sorry everything else is just the same - really sorry - but eating and sleeping are massive improvements to your quality of life (aren't they? I hope so).
Just a question and I know how annoying it is when people say 'have you tried...' did GP not suggest that your estrodial level was low for someone on HRT after your blood test? Of course you should take medical advice, not well-intentioned advice from me, so did you know you can email Dr. Currie for £25 she will give you advice within a day or so, and she's every bit as experienced and knowledgeable as the other consultants we have discussed.
Sorry if this is just going over stuff you've already considered or tried. I just want to help you! xxx
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Dear Edelweiss
You really are so lovely & kind :)
Yes eating and sleeping is massive! I couldn't cope with the rest if I didn't have that.
Thank you for the Dr Currie suggestion I had thought about emailing her but was a little unsure as it says 1 question only and I didn't know how to explain my background without it being too long.
GP said I can't really see anything major with your levels! ... So I accepted that as I didn't know any different :o
Love xxx
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Don't worry about Dr. Currie all you need to tell her is your age, your operations, what HRT you were taking, what dose and how long, and then what's happened, and your blood results, and what HRT you've taken and doses since. That's the info that she will need.
She did several 'back and forth' emails with me, so she was very generous.
Anyway, you DO only have 1 question and that is "What shall I do to feel better?" - right?! xxx
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Thank you so much for your well wishes, Dazned. It's greatly appreciated. Hugs! xxxxx
Diane suggested I e-mail Dr. Currie too, Edelweiss. Just like Alesia, I thought my question may be too complex and as I see Professor Lumsden who is a colleague, I thought it might be rather awkward. xxxxx
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I think it would be fine Tempest, honestly. But just wondering if it might be a bit confusing for you if Dr. Currie gives you different advice? xxx
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Thank you Edelweiss I will get in touch with dr currie :)
And you're quite right there is only one question!
Love xxx